Hi I am new to this site so not sure if this is the place to post. I have inherited Protein S Thrombophailia and have had a deep vein thrombosis a few years back after being put in an induced coma. About two weeks after leaving hospital I developed the DVT and was on Warfarin for three months. Fast forward about twenty four years and I am now waiting for an operation on my great Saphenous vein after a scan revealed I have venous reflux. Had a few tests the other day and am waiting the results of those. I will have to have anti-coagulants before and after the operation and I am dreading getting another clot as my chances must be high. I am sixty five years young and was wondering if anyone else has had a vein stripping and ligation operation and was it successful? I have a few small varicose veins that did not bother me before but after a fall eighteen months ago i developed an ulcer that has refused to heal by the standard treatments. My consultant seems to think the operation will heal the ulcer. Has anyone else any experiences like this. Thanks.
Anyone had an operation on their veins? - Hughes Syndrome A...
Anyone had an operation on their veins?
HI, there are others on here who have had things done which are similar I believe. Some on here as well as Hughes Syndrome/APS. Out of interest have you had the tests for Hughes Syndrome/APS, they are easy for your GP/Specialist to do in order to find out which specific one of these you have: nhs.uk/conditions/thromboph...
Anticardiolipin antibodies (aCL)
Lupus anticoagulant (LA)
Anti-beta2-glycoprotein-1 (anti-B2GP1)
Often other family members will have history of miscarriage, blood clots, strokes or heart attacks at an early age, or other autoimmune diseases including Thyroid. Hope this helps. MaryF
Thanks for your reply. No I have not had tests for the conditions you mention but the whole of my father's side of the family have and have had this Protein S Thrombophailia. I guess if I had one of the other conditions I would have been told by now. My first cousin is on Warfarin for life as she had a DVT in both her legs following an operation.
No you would not have been told ULESS u ask! APS is very rare and difficult to find a doc that knows anything about it!
I know of a few people who have had that surgery. I think it will work for you, because occlusions in the veins higher up in the leg cause the most problems in the lower legs. I don't think they can fix the valves in your legs, but they can try and remove the chronic clot and place a stent in the vein. This will open up the vein and allow the blood to flow again. Your ulcer should clear right up. I know it has helped some other people. I want to have this surgery done on one of my veins someday, as I have many problems because of left over blood clots in my right leg. I hope you find the answers you're looking for. You can also do a google search on Dr. Mark Garcia. He is one of the leading vascular surgeons in this field. Hang in there man.
Hello there, I am in a similar situation to you with Protein-S deficiency but I also have Antiphospholipid Syndrome – plus a very long list of other conditions. I have had numerous DVTs in my lower legs despite anticoagulation therapy (Warfarin and Fragimin) and I suffer from Post Thrombotic Syndrome with scarring and reflux in the deeper veins in my legs.
I wonder if your consultant has considered some less invasive treatments before going for surgery?
Have you tried wearing compression stockings or tights for a longer period, more than 6 months? I have used compression tights class II for the last 5 years and I simply can’t do without them, they help with the pain and other symptoms I get. If you haven’t use compression stockings or tights, talk to your consultant about it as they have to be fitted by the hospital to get you the correct prescription. They look just like normal tights, just a bit thicker and come in different colours.
There are other things to try before surgery too, like endothermal ablation and radiofrequency ablation, laser treatment and possibly ultrasound – all things to try – and leave surgery as a last resort. I assume you are seeing a vein specialist, if not – ask to be referred to one to discuss this. Every operation carries a small risk of further clotting events and surgery on legs might have a higher risk so if you can avoid surgery it would be best.
Good luck to you!
Helene.
Thanks everyone for your replies. Yes I have been wearing compression hosiery and it has helped with the pain of my ulcer although not the itching. Living in the UK with health free at the point of delivery I asked about being sent for a Duplex scan to see what was going on inside but after nine months was still receiving the standard treatment of dressings and stockings and the ulcer was not improving. So I decided to pay for a scan and if needed have a procedure in the private sector. However the consultant was not keen on doing it privately so back I went to the NHS. I have not been told why they were unwilling to do it in a private hospital. My guess is that the cost of treating another clot/clots should I get any, would outweigh the fee I would pay. I was also hoping to have ablation as the recovery time is shorter than stripping and ligation but have not been offered this on the NHS. The longer I have to wait I wonder if I should risk another DVT which caused me to have a PE last time and hope the Ulcer gets better? I seem to be between a rock and a hard place. Reading some of the posts on here makes me realise that other people are in a worst position than me with multiple problems. Protein S is a rare clotting disorder and it is nice to know someone else who has it.
Hi Helene-- were you on warfarin when they tested you Protein S-- the reason i ask is mine was suppose to be very high and when i had my first surgery i had to do bridging with Enox. and they kept me on it for 6 or 7 weeks to be able to accurately test my Protein S and C , well come to find out i was only slightly high and that made big difference and when i got my new Hemo she explained you can't accurately test S and C while on warfarin most of my other DC's didn't know that - I am just wondering if you were tested correctly - i have found a few others that weren't tested while on warfarin and when corrected made a difference ?? let me know please .. C & J
